Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Friday, September 30, 2011

Chicago Trip & CMH Check-Up on Sep 28, 2011

As I mentioned in my last entry, Connor and I headed to Chicago for his Check-Up this week and we left early Tuesday morning on Sep 27, 2011 and we returned Thursday afternoon Sep 29, 2011. We arrived just a bit after Noon on Tuesday and were met at the Airport by our favorite and most wonderful Host Family, the Millers :) Kim and Grant had just finished their own Hospital Appointments so that we all relaxed over some yummy Sushi and a bit of Toy Shopping before picking up Evan from school. It truly is such a pleasure to be around friends when your trip is usually all about Doctor Visits, but whenever we get to stay with the Miller Family, Connor forgets all about the reason of this trip and thinks we are on vacation :)

On this trip we got to have a unique shopping experience at a very cute Toy Store, ride Bikes and Scooters to downtown Glencoe to pick up some very yummy sandwiches for Dinner, we got to play on the beach and Playground and eat at the wonderful Austrian Bakery, Molly's Cup Cakes and of course the traditional Super Dawg. While Connor had some very fun play times with Evan and Grant, I on the other hand had a most wonderful time talking to Kim and her precious Mom Ervil. I can not express enough how much we adore them all!

Now on to Connor and the purpose of this trip. When we landed at ORD I found a message on my phone from CMH to ask me if Connor could come in early the next morning for some labs while he was fasting and then come back for his scheduled Appointment with Dr. Curran at 1 PM. As always Kim must be the most flexible person around because she said it was no issue for her to take us but if he could have his labs at the Clark Street Outpatient Center as Grant had a Dentist Appointment there later on. We woke up early and headed out and the only hiccup for Connor came when he realized he was getting labs taken from his arm and not his port and then he needed two pokes (one in each arm) as there were so many tubes to be filled and his blood flow stopped just one tube short. It was very touching to see Grant being at Connor's side coaching him through all his distress! What was also wonderful was meeting another JM Family, Mary Strep, her daughter and beautiful Madeleine! I throws me each and every time how fast you connect with people you have never met but who are fighting the same battle. You feel as if you were entering a country and find out there are others that speak your language and dialect perfectly. It was heartbreaking sharing our stories but also to celebrate the love we have for CMH, Dr. Pachman and Dr. Curran!
We then, after our marvelous late breakfast and some delicious cup cakes, headed over to CMH for our Appointment with Dr. Curran and some more conversations with the Strep Family. Kim and Grant took the time to explore the Chicago History Museum :)
All in all our visit with Dr. Curran was a huge success! His blood levels looked great! even the insulin levels who we were worried about were good! The only level that was off again was his Cholesterol being high. We are not sure why this is. The discoloration on Connor's neck turned out to be Terra Firma-Forme Dermatosis and was easily taken care of with an Alcohol Wipe :)
Connor's strength test went very well and we finished our trip with an x-ray of Connor's Spine to rule out any fractures. Connor's Bone Density Test still showed him way below the average and so he did have to make the concession of playing on the Trampoline. After this he sure did not brave his normal question of going on a Roller Coaster but in the big picture we are NOT complaining :)

We arrived back home yesterday around noon for lunch and a looooonnng nap for Mommy. After all we had a 3:10 wake up (Mountain Time) and I need my sleep ;)

I am very Thankful to my husband, my Mom and Dad who kept Alexander in his routine at home! Alexander, I was told did wonderful at school and Cub Scouts, which his Dad was a teacher this time and he loved being clued to his Dad for the duration of the last two days. It was funny coming home and seeing my nightstand littered with his Water Glass and reading books :)

Thank You to all of you who have been sending messages and kept checking in with Connor and I on our trip. Thank You to the Miller family for once again providing lots of distraction and fun for us!



There are some other news as well and that is that my feet are feeling much better... and the very heartbreaking news for our family came yesterday night in a phone call that our brother In-Law Ron was given only 3 to 4 weeks to live. In addition to his Lung Cancer he is also having a sever attack from his Leukemia. Two battles with no chance of winning...

Hugs,

R A C A

Friday, September 23, 2011

Sanity needed for .... my feet ;)





Yes, Yes ... I know this is not a JDM post but I figure since I am in charge of this blog I just might use this platform to complain about how my feet have been annoying me ;)
I know, by now you think who would want to miss reading about a post that has to do with feet but if you love me you bare with me as this is a big crisis for little me.

You all remember my motivation in getting myself in shape and better health. As I do with almost everything that does get my attention I dive right in and don't like moving slow or taking to many cautions. I started my adventure with hiking the Incline in Manitou Springs a few weeks back, this summer to be exact as we just entered fall yesterday :) I loved the hike as one might love something that is exhausting and somewhat painful to a body that is out of shape but never less also very addicting because the feeling you get after you finish the hike is second to none. My first hike up was very unprepared as I started out without having eaten anything first and also wearing NIKE shoes but NOT Trail Running shoes. That first time I ended up nauseous and sick and sliding down the trail with hardly any traction. The second part was corrected by my wonderful husband who took me to the Bolder Running Company and bought me $100 Trail Running Shoes. We also bought some great Energy Bars that tasted more like Chocolate Candy bars. Win, win all the way :)
Now my tummy was feeling better and I was not slip sliding down the Mountain anymore but my next two challenges were a right knee that started hurting and an Elimination Diet that I started around that time. The knee we tried to 'fix' with a Knee Brace and I got over the low Energy and cramping of my muscles by stopping the Elimination Diet after about two weeks in.
Now enter a new era ... We became the owners of a very nice Treadmill and I became hooked on the Book 'Born to Run'. The book really touched me and made so much sense about how we have been weakening our feet with to much fancy footwear and that the best runners in the world are actually almost running barefoot for miles and miles a day. They just have on sandals made of old tires and some rope ... this is what they run with for 47 miles through the Canyons in Mexico in a time frame of 7 hours!
So here I thought ... yes scary, I know :) ... that if they can run barefoot why can I not try this out here at home on the treadmill. I did not go completely barefoot but did keep my socks on ... big difference, right? ;)
The first day I ran two miles in my shoes and one mile in socks. Day two I ran all three miles in socks and so one for about one week. Now I did feel as if the impact I made when my feet hit the running belt that it was very hard but truly did not think much about this beyond that. Now about one week later I was sitting on the computer and telling my husband that me ankles are hurting me. He asked me to show him and when I pulled down my socks I was shocked to see that both my feet were very swollen. We iced them and I started taking Motrin. Now, being me I figured I take a break from running on the Treadmill and now move over to running in my expensive shoes again around our Mountain. I figured I do this until my feet start feeling better again. Well, this kind of math did not work out very well as we are now two weeks later and I am able to walk but not much of that and running seems like a distant memory :( My days now go from walking a bit to putting ice on them and medicating the pain that shots up my heels with lot's and lot's of Motrin. We added the Tense Unit as well which helps on some days and not on others.
I finally broke down today and called a Foot Doctor to make an Appointment. The first opening was for mid October and when the Receptionist asked what the problem was I told her and said I do not like the pain I have when I run. Her reply was that I should not run at all. This I told her was a problem as we are now entering the perfect season for running (Fall) and that I need the running now more then ever as my Parents have arrived from Germany and there is literally Chocolate and yummy foods around me 24/7. I was more thinking in terms of days for them to get me back on my feet ... Can you believe she actually laughed at me through the Phone??? She said I will need to focus on sitting out this whole season and that I can enjoy hopefully running in the Fall of 2012. Well, I admit she had a funny laugh so I did laugh with her but thinking she really does not know me very well or not at all. It took my brain 40 years to finally wake up and say I like to move and stay fit and my feet will not be my stumbling block ... just a little obstacle to over come. Now reading all this did you realize the silver lining? Not once during my barefoot runs did my knee bother me. Not once was I wearing a brace on my knee or needed it.



On the upside of all this is that we are thrilled and happy to have Oma and Opa here! School is going very well for the boys and the weather here in Colorado is beautiful.
Life is truly good and now my feet just have to wake up and follow suit.

Thank You for letting me take the stage again here and I am sure I will be back with lot's of JDM news once we come back from Chicago next week. Connor is scheduled for a Checkup and we are so looking forward to spending the three days there with our favorite Roommate (HAPPY 13th BIRTHDAY Grant!) and his beautiful Family. This is the part that always makes us look forward to traveling to Chicago!

Hugs,

R A C A

P.S. oh and we did get to celebrate the Oktoberfest last weekends therefor the pictures on the top :)